Nicole Ver Kuilen can trace her path to activism back to the year she turned 10. That's when she was diagnosed with bone cancer. To save Nicole's life, doctors at Mayo Clinic amputated her left leg below the knee. By summer, she was ready to get out of the hospital and back to being a kid.
"My leg was built, I was done with chemo, and I was ready to hit the water," Nicole tells us. Then she learned her new leg had a serious drawback: it wasn't waterproof. "My mom wrote to our insurance company to try to get a waterproof leg so I could play in the water with my friends," Nicole says. The request was deemed "not medically necessary," and the claim was denied. "That was my first realization of the injustices facing amputees."
In the years since, Nicole has become all too familiar with the refrain "not medically necessary." And she's decided to do something to change that tune. She's embarking on a journey, which she calls "Forrest Stump," to raise awareness about the issues facing amputees.
Nicole, an accomplished athlete who often stands in the winner's circle when she competes against able-bodied peers, is swimming, biking and running from Seattle to San Diego. She hopes the 1,500 mile triathlon, which began Sept. 1 and wraps up Oct. 22, will help people see amputees — and the insurance challenges they confront — in a new light.
"Insurance plans only cover one prosthetic at a time, and they don't always fully cover the costs," she tells us. And there are additional costs as well: silicone liners and prosthetic feet, and the considerable time it takes to plan ahead. "There's a lot of prep work when you have a prosthetic," Nicole tells us. "You're constantly planning what you need." The last time she needed a new limb, it took 12 months and 26 appointments.
A prosthetic generally lasts three to five years. And each time Nicole is fitted for a new device, she's forced to choose between a leg that's best for walking, and one better suited to the activities she loves. Or even one that's waterproof. "There's incredible prosthetic technology out there, but it's out of reach for most amputees," Nicole says.
She's hoping Forrest Stump will help change that. When she finishes the final leg of her journey in San Diego, Nicole hopes to travel to Washington, D.C., to advocate for legislative changes. And after that? "I'd love to do an Ironman," she tells us. "The next iteration of this journey could be Iron Stump!"
You can follow Nicole's journey on Facebook and learn more here and here. Then run on over to leave a comment below before using the social media tools atop this page to share this story with others.
Tags: Bone Cancer, Mayo Clinic Children's Center, Osteosarcoma, Patient Stories